I have done it! It’s all over! I have delivered my  speech as the last speaker at the General Assembly of the UN. As they say in a Yoruba proverb the big masquerades come last….

You can find the webcast  here. The intervention of civil society is at the end of the 3 hours.

” I stand before you today as a woman living with HIV to affirm why our involvement is important. Those of us who are directly affected by HIV and all the key populations who are also made vulnerable to H-I-V  need  to be at the centre of the response to the HIV epidemic.

When I was invited to this High Level Meeting with the task of speaking on our involvement, I was so excited. I profoundly believe that our meaningful involvement can radically change and make much more effective,  our response to the HIV epidemic. However, when the draft declaration was released, some doubts started rising in my mind. Are you are truly listening to us, women living with HIV?

I applaud the declaration for the ambitious goal of putting 15 million people on ART by 2015. But I am concerned, after hearing every single woman with HIV in this meeting calling for our recognition as women in every stage of  our lives, that the only target set for women in the declaration has to do with ‘ Mother to Child Transmission’.  We don’t have value just as ‘baby makers’ we need to be acknowledged  and our rights to health must be promoted and upheld, in every stage of our lives. Whether we have children or not.

Moreover every single woman in this meeting talked of how Gender Based Violence is both the cause and the effect of HIV.  Therefore, in addition to the strong declaration to end violence against women, we also need concrete and specific numeric targets and investment in this area.  I am also deeply concerned by the absence of a target for key populations who are made most vulnerable to HIV, such as transgender people, as well as the disappearance of providing housing as a priority intervention. How can we be successfully being involved and work together to reverse  this epidemic when  essential rights, are not met?


I rest hopeful that by telling you today why is important to involve us and invest in us,  you will listen,  and together we will be able to instigate more actions,  which will make a real difference in women’s lives, my life, and in the lives of the whole community.

There are six clear reasons why our involvement makes sound and common sense.

Firstly our involvement makes sense for historical reasons. We follow the steps of the most powerful liberation struggles of the past 200 hundred years: the anti-slavery movement, the suffragettes, the civil-rights movement, the international labour movement,  the anti-colonization struggles in the Americas, Africa and Asia,  and, most recently, the anti-apartheid movement have all had at their core the most affected people. And they were all successful in creating a change that initially was viewed as unreasonable and unattainable. Our ancestors, fought to make the vision of dignity and freedom a reality.  And so do we.

My second reason is legal: as Member States of the United Nations you are bound by the declaration of human rights to uphold all our rights to participation, dignity, equality,  freedom from degrading treatment, freedom to have a family, freedom of access to information.  Sadly many of these rights are denied to us who live with H-I-V,  and others who are made most vulnerable to H-I-V, not only in less economically developed countries, but even in the so called developed Europe, where I was born. We need more then medications to live with dignity and safety, we need  your acknowledgment and solidarity and the support of everybody around us.

Thirdly our involvement makes political sense:  creating a solid alliance with civil society will make the response more powerful. It is better to work together, and have us on your side rather than against you.  We cannot afford to waste our energies struggling against each other. We are the ones who are living with HIV every day in our bodies, families and communities. We are the ones who can best advise on what knowledge or skills or powers or choices we should- have- had, which could have enabled us not to acquire HIV in the first place. Engage with us and Use our personal experience.

Fourth, it makes economic sense to work together: in the present times,  when  resources are limited,  we can provide a committed work force. I have been employed as an openly HIV positive support worker within a team of other positive employees for over 10 years and I know, because of my direct experience, that we will work harder than anybody else to lessen the impact of H-I-V on our communities. Of course we need to be valued and remunerated for our efforts. But it is not just a salary that motivates us: it is the future of our children, our families and those close to us. Moreover we all know that a vibrant community translates in economic growth.

Reason number five is awareness and   Education:  We need to continue  to increase the voice and visibility of us who live with H-I-V. This is the most powerful tool for ensuring that communities see real faces in this pandemic,  and it goes a long way in ending stigma.  When people realize that someone with HIV is just like you and me, they also realize that H-I-V can affect anybody and this plays an extraordinarily important role in our prevention efforts.

My last reason is around  health: and not just our own individual health but the health of the societies we live in. H-I-V has not just damaged our bodies it  has deepened existing wounds in our communities. Stigma and discrimination hurt and damage both who receive it and who  perpetuates it. This is why we all need to heal together. Of course when we are involved our own individual health improves:  we have better mental health and emotional  resilience; when we can be open about our status, adherence to medication improves, which means we can stay longer on cheaper treatments and we can keep the virus in our bodies undetectable. Being successfully on ART, according to recent scientific trials, means that we are up to 96% less likely to transmit HIV. The ultimate result of our improved health is that communities are healthier, with strong  committed citizens, working for broader health and policy, beyond HIV.  And as prejudices and lack of inclusion disappear, also as a result of our involvement, and acceptance, communication and social cohesion grow, we heal together. Together we create a world that is healthier,  for all.

Because of these six clearly inter-connected reasons: historical, legal, political, economic, educational, and  health, it is clear that it make so much sense to invest in civil society. Like two hands working together to turn a wheel, so together, hand in hand, we can achieve real solidarity, or, as it is called by my bothers and sisters in South Africa, UBUNTU. United we can achieve the social, economic and cultural transformation necessary to revers the HIV epidemic and succeed in our vision for global health.”

I have written this speech in collaboration with Alice Webourn  and with the support of Sophie Dilmitis at UNAIDS.







2 thoughts on “Why Involving us is important

  1. Hi there.

    I have just received all your work – for the first time in my email inbox. After skimming you site – I think it is brilliant. I am also very pleased you had a facebook link to your work. As I am a little bit of an activist myself. When I joined facebook I didn’t realise that I could share valuable information relating to all issues like health and social care, with much of the reference relating to HIV.

    My facebook profile name is Michael Anthony Snaith – I allow people to look and if they want join my friends – it is always their choice. Please check me out and join my friends list.

    Keep up the good work


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